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Dilation's Again and Again and Again and Again...

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

Esophagectomy was December 10, 2010. Recovery and all was pretty good until October 2012 when swallowing difficulties resulted in my first dilation. Scar tissue had decreased opening to about 10mm so I went thru 4 dilation's in 5 weeks eventually improving swallowing. Then in January 2013 symptoms began to return and I decided it was time for a second opinion, which Dr. Marks fully supported. He sent me to UAB and Dr. Wilcox. 

 Dr. Wilcox pretty much preformed the same procedure but injected the scar tissue with a steroid.  Steroids he said had been shown to make the dilation somewhat more lasting.  The dilation had to be preformed in stages since the stricture was so severe but after the first one I could immediately tell a big difference. One week later, the second exact same procedure and all was GREAT.  that is until April when I noticed something was not quite right. Once again he went in to dilate, unfortunately this time he found a mass of concern! No injection this time cause that alien was down there.  Pathology could not completely rule upon it without additional samples. Soooo, a second visit last week obtained additional sample and since he was down there...another dilation but again with no injection.

 So now I wait for that damn ominous phone call while I enjoy this Beautiful Sunny Cool Spring Day in Birmingham Alabama as I sit beneath the buttocks of Vulcan.

 For those that must endure the seemingly endless dilation's...maybe a discussion with the doc about steroid injections that might improve your outcome.  I hope so.  In any event Thank God for those people who have the desire to fight and find a cure this stupid disease.

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Hoping for clean pathology for you. Another brave soldier. The dilations really stink and I wish there was another way, and a cure. I will keep you in my thoughts> In the meantime enjoy the sunshine!

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

I sincerly hope your biopsies come back with no cancer found. 

I don't want to scare anyone with my next comments. They are said with the hope that they will help someone and give information that is seldoms seen, and we did not know about until it was too late to do anything. If this helps someone to recognize the need to further question what is going on I will be glad.

That being said I feel the need to be an advocate to let people know about excessive stretching needed following surgery.  My husband had surgery Aug 2010, and late 2011 was having trouble swallowing. He was being stretched every few weeks until it no longer helped.  End of December something doesn't look quite right during a stretch.  Tissue is seen where a staple from the original surgery had come out and the area under looked suspicious.  I question why they don't do an ultrasound along with the stretches.  It would be a relatively simple thing to do considering they are already doing the regular scope and stretch.  Did you know most recurrences occur on the outside of the esophagus and most original growths are on the inside of the esophagus?  Scope and visual will NOT show a recurrence of cancer, after surgery, that is located on the outside growing in.  Why are the dr's not doing a better job with this situation and just keep stretching without knowing why? In essence it was the recurrent tumor being stretched.  This really upsets me.  PLEASE, PLEASE if you are requiring regular stretches request the dr to do further testing to be sure there isn't anything lurking that they can't see on visual inspection. 

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

I sincerly hope your biopsies come back with no cancer found. 

I don't want to scare anyone with my next comments. They are said with the hope that they will help someone and give information that is seldoms seen, and we did not know about until it was too late to do anything. If this helps someone to recognize the need to further question what is going on I will be glad.

That being said I feel the need to be an advocate to let people know about excessive stretching needed following surgery.  My husband had surgery Aug 2010, and late 2011 was having trouble swallowing. He was being stretched every few weeks until it no longer helped.  End of December something doesn't look quite right during a stretch.  Tissue is seen where a staple from the original surgery had come out and the area under looked suspicious.  I question why they don't do an ultrasound along with the stretches.  It would be a relatively simple thing to do considering they are already doing the regular scope and stretch.  Did you know most recurrences occur on the outside of the esophagus and most original growths are on the inside of the esophagus?  Scope and visual will NOT show a recurrence of cancer, after surgery, that is located on the outside growing in.  Why are the dr's not doing a better job with this situation and just keep stretching without knowing why? In essence it was the recurrent tumor being stretched.  This really upsets me.  PLEASE, PLEASE if you are requiring regular stretches request the dr to do further testing to be sure there isn't anything lurking that they can't see on visual inspection. 

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

I went through 5 weeks of hell in the fall from endos to EUS and then CT/PET to finally rule out recurrence.  Then this crap.  Unfortunately doc told me today that majority consensus  was a recurrance.  The current samples are "well differentiated" so he is obtaining slides from my surgery  to compare. Soooo, another long weekend.

 

 

I agree. I have total trust in all my doctors but I'm just one patient and sometimes you need/have to rattle a few cages to get the attention you deserve.

DesperateInAtlanta
Posts: 3
Joined: May 2013

My husband had chemo and radiation a year ago for stage 4a oropharyngel (esophageal cancer that is high up at the base of the tongue, not the stomach end). He developed a severe stricture almost immediately after radiation was complete. Basically he has been unable to swallow much of anything since except maybe a few thin liquids if he was careful. He went to 3 different doctors here in the atlanta area who tried to do the esophageal dilation (stretching) thing but they were all unable to do so, even tried using a baby sized peiced of equipment (sorry i dont know what it was called). It is becoming harder now for him to swallow even thin liquids. We are looking for a doctor who is very very good at widening these strictures...someone mentioned the possibility of a Doctor in north carolina who is highly recommended but couldnt give us the name or even the town. Im hoping someone here can help us out?   Actually if you know of ANY doctor anywhere who is very good at either stretching (dilating ) the stricture or placing a stent or surgery or anything that would help, please let us know. Husband is really depressed (understandably) about this.

trebor's picture
trebor
Posts: 4
Joined: Jul 2013

I have had my share or 'non viable', unusable dilations and have had to rely on my feed tube. 

I am a new member here but I am past my 5th year of diagnosis, flights of fearful fancy and medical intervention, which did include the insertion of a PEG tube.  This was done within the 2nd month of my diagnosis.  New to me, I went with the flow.   The one most interesting thing I have not seen concerning head and neck and esophageal cancers are the decisions on the doctor's behalf to have all your teeth removed!  THAT was more traumatic to learn than being told I was Stage VI, SCC and could possible have to have my jaw broken, tumor removed and hte face reconstructed!

But I digress.  The peg tube you get initially, as to my understanding, is the one that is a long tube that sticks out your stomach and has a one way valve on the end.  Through this you supply your liquid needs, because corn sure isn't going through it!

At one point in my different surgical procedures (5 total) my original feed tube was accidently pulled out (with a loud pop!) and the hospital went into a panic because they had never had this happen before.  I think the nurse who did it got her name on a plaque of some sort.

The following day, they replaced it with a different typeKimberly Clark Mic-Key Low Profile Gastrostomy Tube Kit - 14 Fr, ... of PEG tube entrance device.  See the illustration.  This is called a MIC-KEY Low Profile Gastrostomy Feeding Tube, which is a questionably accurate name.  It is the 'port' to which you attach a removable tube, through which you pour your liquids.  At first my wife was Vita mixing everything in the house, not taking into consideration the caloric valure or it.  Although the VItamix can turn a two by four into a liquid, it doesn't necessarily render everything into a passable medium for that 3 mm hole at the end of the tube.  Final outcome has been, Ensure and I have become best friends.  We been going together longer than any girlfriend I ever had. (priorities I guess!)

http://www.mic-key.com/resources/reimbursement-information-page.aspx  is a link to those who are on medicare and need a break in costs of things.  I want you new patients to know this information up front because I was 4 years into my PEG tube journey before we accidently found out MEDICARE would handle it.  You don't have to do that.

if you want to follow my entire trip, look at  gnoled.blotspot.com and find out about the ONLY contagious cancer out there.  I have no connection with these people above other than I love their product!  good luck to you all!

trebor's picture
trebor
Posts: 4
Joined: Jul 2013

I have had my share or 'non viable', unusable dilations and have had to rely on my feed tube. 

I am a new member here but I am past my 5th year of diagnosis, flights of fearful fancy and medical intervention, which did include the insertion of a PEG tube.  This was done within the 2nd month of my diagnosis.  New to me, I went with the flow.   The one most interesting thing I have not seen concerning head and neck and esophageal cancers are the decisions on the doctor's behalf to have all your teeth removed!  THAT was more traumatic to learn than being told I was Stage VI, SCC and could possible have to have my jaw broken, tumor removed and hte face reconstructed!

But I digress.  The peg tube you get initially, as to my understanding, is the one that is a long tube that sticks out your stomach and has a one way valve on the end.  Through this you supply your liquid needs, because corn sure isn't going through it!

At one point in my different surgical procedures (5 total) my original feed tube was accidently pulled out (with a loud pop!) and the hospital went into a panic because they had never had this happen before.  I think the nurse who did it got her name on a plaque of some sort.

The following day, they replaced it with a different typeKimberly Clark Mic-Key Low Profile Gastrostomy Tube Kit - 14 Fr, ... of PEG tube entrance device.  See the illustration.  This is called a MIC-KEY Low Profile Gastrostomy Feeding Tube, which is a questionably accurate name.  It is the 'port' to which you attach a removable tube, through which you pour your liquids.  At first my wife was Vita mixing everything in the house, not taking into consideration the caloric valure or it.  Although the VItamix can turn a two by four into a liquid, it doesn't necessarily render everything into a passable medium for that 3 mm hole at the end of the tube.  Final outcome has been, Ensure and I have become best friends.  We been going together longer than any girlfriend I ever had. (priorities I guess!)

http://www.mic-key.com/resources/reimbursement-information-page.aspx  is a link to those who are on medicare and need a break in costs of things.  I want you new patients to know this information up front because I was 4 years into my PEG tube journey before we accidently found out MEDICARE would handle it.  You don't have to do that.

if you want to follow my entire trip, look at  gnoled.blotspot.com and find out about the ONLY contagious cancer out there.  I have no connection with these people above other than I love their product!  good luck to you all!

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

Got the phone call I've been waiting on for two weeks and news is as I expected...recurrence.  Now the hard part begins as I have to tell my wonderful wife of 36 years and two children, not to mention all the extended family and friends.  I wish I could just put it in a text or email with a bunch of FAQ's so as not to have to explain over and over again. 

It is way too early too know what steps are next.  This was just the initial diagnosis and discovey and I will be seeing new oncologist so we'll see what happens.

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

Got the phone call I've been waiting on for two weeks and news is as I expected...recurrence.  Now the hard part begins as I have to tell my wonderful wife of 36 years and two children, not to mention all the extended family and friends.  I wish I could just put it in a text or email with a bunch of FAQ's so as not to have to explain over and over again. 

It is way too early too know what steps are next.  This was just the initial diagnosis and discovey and I will be seeing new oncologist so we'll see what happens.

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